The dice slipped from my hand, landing on the game board, knocking a few Houses from their resting place. Each die clattered against one another upon impact, coming to an eventual stop several feet below my wary face. The “Horseman” piece--the one I always preferred--moved clockwise, once space for each dot that the dice displayed. Whereas my uncle seemed to relish the spot that my metal game piece landed on, I was merely deflated. “Boardwalk,” Dennis boasted. “Pay up.”
Abstruse as most realities of life are, Monopoly is the most popular and well-known board game in the world. I’m sure you’ve spent at least one afternoon playing the game with family or friends. I haven’t touched a Monopoly board in years yet I can ascertain that I’ve played it often as a child. Growing up in the 1990s, among a generation of gangs, violence, and a youth-fueled cocktail of sex and drugs, I still found myself sitting in a group, “Horseman” at the ready and with an odious Uncle Dennis (and his obstinate insistence of controlling the “Car”) by my side.
Maybe that’s the framework of life: Everything being the roll of a die. Perhaps God knows every little aspect of one’s life. A person’s past, present, and future might be written out in a massive book on His coffee table. Who knows? My uncle wasn’t a deity and didn’t believe in the notion of “re-rolls” (or God himself, to be perfectly honest). But our oh-so-humble Lord isn’t as unforgiving as this oddball existence called life--or a self-centered uncle--is. It’s only after we’re given a new chance that we truly grasp the nature of things of which we only thought we had a grasp of. I’m sitting in this comfy chair, typing these words out, because of the re-roll life had bestowed upon me. I didn’t have one shot at it. I was given numerous chances at this game, this... life. I’ve undergone one metamorphosis after another, thus I’ve changed a lot throughout the years. But I’m here and moving on, albeit not in the way that I’ve envisioned would ever be the case.
To be blunt: What people see in this shell is nothing like what was perceived in the 1990s; what lurched in the 90s wasn’t perceived to have been possible, at all.
Return of the Jedi tore up the box-office in 1983. Culture Club and Adam Ant terrorized the young society on the radio and on the still-in-its-infancy MTV. And more to the point: A child was given birth to, with the assistance of a Caesarean, in the afternoon of February the first. As legend has it, the mother, Sheri Childers, was expecting her child to be birthed around the twenty-first but during one check-up, she fell into labor and the little boy was delivered, three weeks premature. The boy was then christened Randy Lee Childers. He was an ugly baby, born without hair despite having a mammoth head. Still, the baby was there, alive and well.
It died not long after.
My mom always called me a SIDS baby. I wasn’t sure what she meant by it other than it somehow took my life. I only learned as an adult that SIDS is an acronym for Sudden Infant Death Syndrome. It wasn’t for long but I clinically died after birth. I was resuscitated--twice, I think--but still, that big-headed baby somehow lived to see another day. The year 1983 was my first. Somehow, that doesn’t seem strange to me. Peculiarly, it seems to make sense. I’ve admittedly grown up to be a vulgar, perverse character and seeing that 1983 had a then-record of R-rated movies released, it almost seems fitting that I came about when I had. The year was fated to be my last, too but it’s something I don’t think of often. Thoughts like that can be a tad frightening.
Life, itself, can be more so. Nonchalance makes up my world. I’m not partial to vanity, avarice, or most trivial thrills of random origins. Even petty celebrations, I’m a stranger to. I’m typically secluded and moderately introverted. I was a weird kid, a fact that I’m proud of to this day. Yet still, I was sheltered a lot, enclosed in a self-imposed cocoon away from most of life’s little, unnecessary dramas and the social politics of high-school. My hearing had lessened as the years progressed, requiring hearing aides. That really hindered any real hope of a social life. My mom was alive at the time I was tested for hearing loss and for the subsequent appointments with audiologists in Athens, Ohio. Kids hate having glasses and the resentment is justified by the way at which the wearer is teased by his peers. And here I was, a mere thirteen, and I had hearing aides fitted discreetly in my ears. “Will my natural hearing get better if I use these?” I asked my mom, knowing her answer before my question was ever spoken aloud. I didn’t wanna be the kid with hearing aides. My glasses were fodder enough for teasing, ya know. As much as I feel weird thinking of it, I kind of wish it was still that day, in 1996. On that day, at the least I had the defective hearing, encompassing the need for the devices. In 1996, I could hear.
You’ve probably heard the cliché at least a thousand times: “When I learned about (insert peril here), it was like a bomb dropped on me.” Sixteen years had passed since that whole, pesky SIDS thing. I was already going through my share of tribulation, having lost my mother to cancer two years earlier and riding my teenage-experimental wave of drug use. It was my sister and aunt who pointed out something that I knowingly should have looked into yet shunned. I had a lump on my face, along my right jawbone, and two smaller ones at other facial locations. “Randy, you should really get them checked out,” the two told me. I downplayed it, saying it was nothing to worry about. I had no reasons to be alarmed...
Actually, I did, whether I wanted to accept it or not. My past medical dealings should have been taken into consideration by me. To make a long story short, a tumor developed on the middle segment of my right hand’s middle finger. It was believed that my sister was the culprit, that she inadvertently caused massive swelling to the poor digit after a childhood incident. I grew tired of the dreaded thing and the controversy that surrounded it (a common occurrence was for Child Services being notified of child neglect on my mom’s part that supposedly resulted in the abnormal growth). Around mid June of 1996, a doctor examined my hand and more or less shrugged. “Well... what am I supposed to do?” That million-dollar question was not only anticipated but expected, as I’ve heard it or a variation of it for years by numerous medical experts. This time, I supplied the answer. My mom gave me such a startled look after I spoke up. “Are you sure?” she asked. I explained my disdain for the stupid growth and my desire to rid of it, no matter my sacrifice. On July seventeenth of that year, I became a finger less.
It was a price I had to pay if I wanted to rid of it. See, the tumor was encased with a large bundle of nerves. The finger had been operated on once before. After seeing the severity of the situation, the finger was stitched back up without the tumor’s removal. I was told my finger would have been lifeless had the tumor been removed. I wanted to quell the harassment authorities spewed at my mom and well, the tumor annoyed me. My only option at that point to succeed in removing both disturbances was to have the finger hacked off, as it was. We now know what the true culprit was but that didn’t stop Traci, in her youth, from reoccurring nightmare of guilt, guilt she shouldn’t have had.
* * *
The public library, in my hometown of Wellston, Ohio, had an unusual visitor. I made an appearance time and time again, to use the library’s computers for “surfing” that peculiarity that was referred to at the time as the World Wide Web. This time, possibly around May of 1999, there was a much different reason than looking up information on Ozzy Osbourne, as was my typical. I had a date with an audiologist not long before. According to Paula, my aforementioned aunt and Dennis’ sister, a tumor was found in my head during an examination of my eardrums. That, mixed in with the facial “lumps” and the tumor on my long-removed finger brought up questions. I was sent to a local doctor, where a piece of tumor was removed from my left leg and sent to Columbus, Ohio, to be analyzed. “It looks like neurofibromatosis, type two,” I was told by the local doc. “NF2.”
I didn’t know exactly how to pronounce it, let alone spell it. That didn’t prevent me from my search for edification. I knew something was wrong. “The world feels like it’s spinning around me,” my mom was known for saying. It’s a condition known as vertigo. And like her, I had a severe case of my own. My thoughts were colorful but not very... nice. I’ve had visions too unspeakable of and scenarios playing through my head that the “normal” person would never believe. I knew there was a problem; I simply couldn’t affix a name for it. From that day--with the biopsy and subsequent library visit--I gave myself a label, one I’ve carried for weeks following it. I dubbed myself, simply, defeated.
Death truly has its way of causing one to reassess his life. Being at a much younger age, I’d listen to music in bed, lying perfectly still. I’d daydream of being that vocalist. I wanted to be that Ozzy, that James Hetfield... Blackie Lawless, maybe... standing before tens of thousands of screaming fans... it wasn’t until I was around the age of thirteen that I stopped to ask myself: Why am I dreaming of this? I was still relatively young, I rationalized. Why dream it when I could go out and actually do it? Writing was an almost-as-big thing to me. Not to be arrogant but I’ve had teachers as far into my past as the third grade to praise my writing and imagination. I’ve wanted to write a novel since I was a minuscule six year old. Again, I was young, going through that annoying puberty thing. I had ambition. I had drive. And yes, I had talent. Yet I was slipping away. I felt myself digressing in mind and body. Throughout 1999, a doctor’s office became my second home. No one would tell me but I knew it: I was dying.
At least in my mind, I thought that I was. One day, while driving about up in Columbus with Paula, I pivoted my head ninety degrees and ask the only thing that was on my mind: “Am I dying?” Suffice to say, she was livid. I was only fourteen when she and I witnessed my mother being interred. Two years later, I had this sickening feeling that I was on the verge of my own destruction. You see, this is far more common than you might think. Being told that one has a disease encompasses irrationality and fear. It wasn’t just me: the mere thought of having a disease feels as though you were handed a death sentence. It brings about numerous questioning and contemplations. “Why was I targeted? What did I do wrong? Am I being punished for past atrocities? Will this end me? Am I gonna die?” These are thoughts that no one should ever have to mull. Granted, when you’re given the “death sentence” of a disease, imaginations runs rampant... and the roads taken by it can lead to troubling waters.
It is in human nature to fear what one doesn’t understand. Some of the above questions aren’t difficult to answer on your own. Are you gonna die? Sure you will, some day. We’ll all meet our Maker at some point. But that doesn’t mean we disease-stricken individuals will succumb to our ailments. It’s true that those born with cancer may wind up dying from it but having cancer doesn’t mean that it’ll eventually kill you. I’ve heard of many people seeing the age of sixty and not fall to their disease. The same applies with NF2. The word “neurofibromatosis” isn’t medical lingo for “Write a will soon and cherish your final days.” Neurofibromatosis isn’t a death sentence, at all. No disease is. In essence, it’s only a speed-bump in an otherwise normal life.
The other questions are open to interpretations. Maybe we are being punished by someone, somewhere, for our conditions. I personally don’t feel as though God is responsible. Things happen; He simply watches on to see how everything goes. One of those “things” is neurofibromatosis. NF2 is a non-contagious disease. It cannot be contracted or spread in the same way as the HIV virus can. We are inflicted with it through gene mutations or from parental inheritance. In my case, I was the unwelcoming victim of a gene mutation. And I’m not talking about a comic-book gene mutation. It’d be pretty awesome to have the ability of controlling metal or manipulating fire yet NF2 only entails the growth of tumors pretty much throughout one’s entire body. Whatever the cause or purpose of it, if there is one at all, people with NF2 have NF2. It’s not a cool gene mutation to have. Stan Lee wouldn’t like it.
Like I said though, the realization of having a disease is crippling, no matter how destructive the disease itself really is. And from personal experience, the what-if’s only get worse. July was hard on me, both physically and mentally. I was given an official diagnosis, necessitating a lot of clinical work. My hearing was dangerously low. The disturbing thoughts grew only the more obscene. I knew there was a tumor in my head that was gonna be surgically removed later in the month. The uh... specifics, I wasn’t aware of at the time. It wasn’t a small tumor. In actuality, the one removed was rather large, about golf-ball size. Is SIDS responsible? Beats me. I’m just speculating. Still, that tumor was there, pressing against my brain stem. If nothing else, that explained why I felt like I was literally going insane. It shined light on my right ear’s hearing loss, too. Even with a hearing aid, there wasn’t much left that the ear could process. As its natural hearing was likely under ninety percent, I wrote the ear off as deaf and abandoned that ear’s hearing aid. It seemed logical to me.
My options were little. Had I not undergone surgery, 1999 would have truly been my last. June the twenty-sixth approached me somewhat silently. I was about to have surgery. I’d be operated on, bed-ridden for awhile, and would lose the remaining hearing in my right ear. Funnily, I didn’t see the severity of the procedure. I saw a diagram of what was to be done with my ear. Having it sliced about half-way off was unsettling, though now I don’t think I’d have minded pulling a Mick Foley and going ear-less; these days, my ears are more or less decoration. I knew little else of the procedure: Remove the tumor, stitch my head up, and recuperate. I’ve had enough operations to tell you... the less you know about what’s being done in a medical procedure is the better off you’ll be. The 1996 operation was simplistic enough. I entered the hospital in mid-morning and left later in the evening. It seemed trivial enough to remove a tumor from within this big head of mine.
“I gotta go, man,” I said to my brother on the day before it all went down. Remembering the short hospital stay of the ‘96 plastic surgery, I followed that with what seemed the most accurate at the time. “See ya in a few days.”
That’s unrealism for ya. I actually thought it was gonna be a short, quick ordeal. Even worse is the fact that I didn’t know how life-altering the whole experience would be. As the case is for many people with NF2, the tumor was located directly on my auditory nerve. Meaning? In order for the tumor to be removed, the nerve--and that ear’s hearing--had to go with it. To this day, I don’t miss it. My right ear was never too good at its job, anyway. But “a few days” was an uneducated pipedream. This wasn’t a digit-removal affair. It wasn’t a handful-of-hours thing. In all, I was under the knife for approximately nineteen hours, thirty minutes. The operation was only the beginning, an interlude for all that was to come. I was kept sedated for several days--possibly a week. And then, the real fun started.
Rheumatism comes into play with most extensive operations. That, hospitalization, therapy: It’s all a package deal. For a few weeks, my routine was pretty much the same. I was on the first floor of Dodd Hall, at the OSU Medical Center, every morning, peddling away on exercise bikes or partaking in personal-or-group therapy sessions. Daily, I’ve lied in my bed, dreaming of outside life, in wistfulness, dreaming of what my world was to be like upon my discharge. Paula visited me every other day. That was the only thing I had to look forward to... that and starting the next chapter of my life. I look back on that summer as the worst point I’ve ever endured. There was too much uncertainty, too much unrest. I was told during a session of speech therapy one day that my discharge was imminent. I felt much relief at the news yet it scared me, too. I was to leave and start afresh; I was still mulling the simple question: How? Physically better, removed from problematic thoughts and most associated issues I once carried from the tumor, I was officially discharged on July the twenty-seventh, nearly a month after neurosurgery. It was time to move on, time to close that melancholic chapter and start the next, with aims of making that one more tolerable. That big-headed baby dodged a second bullet.
* * *
Here I sit, alone aside from my thoughts and a cat that antagonizes me daily, demanding to be pet. It’s been almost three decades that I’ve occupied this body, moving on from one adventure to the next. Four months removed from that mid-1999 operation, I had a subsequent one on the other auditory nerve. Yeah, you’ve guessed it: my left year had been drained of hearing and deafness settled in afterward. I’ve had many operations in my life, so many that I couldn’t tell you the figure from the top of my head; if I were to guess, I’d say ten or eleven, ranging from simple biopsies to Whipple surgery. In the past five years, I’ve written two novels, lived in seven different cities, and dodged a third bullet, one that a friend present with me wasn’t as fortunate with avoiding. I’ve dated my share and was engaged at a point. My life these days is nonchalant and mostly non-eventful. Believe me: After all the hoops I’ve been jumping through in my life, it’s really nice to have some simplicity.
Through it all, NF2’s been right there, hogging the driver’s seat and more times than I’m happy about, taking up the driver’s seat itself and navigating rather zigzagged down the highway of life. My ability to concentrate isn’t as great these days. Mobility isn’t the greatest, either. I have a very instable gait, necessitating usage of a cane. I am perfectly deaf, still. Factoring those tidbits in with a crippled right hand & facial paralysis and you’ve got one disappointed man. Yeah, I’m disappointed at how my life turned out, kinda. I suppose considering I wasn’t meant to see the year 1984--let alone the twenty-first century--things aren’t that bad. It’d have been disheartening and cruel for an angel to pop up in 1983 and say unto me, “You’ve made it two minutes. Eh, you’ve had a good run.” My twenty-ninth birthday will be here soon. It is simply “just another number” to most; it’s kind of a privilege to me. Everyone has a one-hundredth birthday, after all; most of us never live long enough to celebrate it. It’s best to cherish what you have, when you have it.
Recently, I’ve been considering what’s known as an auditory brainstem implant, ABI for short. It’s a lovely procedure for us deaffies, aimed at restoring partial hearing. There is a lotta technical stuff involved with it, things outside of the scope of this story. If you’re deaf from complications of NF2, you might want to look into it, too. It requires surgical work, an idea that I’m not too keen on. If it works, I won’t complain. I want some hearing restored, yes, but I don’t want to have to undergo surgery. This statement can easily stretch back further. After all, I didn’t want to have a tumor jerked off my spine or to have pancreatic cancer cut outta me or have a finger removed. In most cases, such as the spinal tumor, it was literally do-or-die. Had I sat back and refused surgery, well... use your imagination. The idea of more surgery is unsettling. This time, though, it wouldn’t be a requirement for sustaining life. If I have this done, it’ll be--just like with my finger--on my own terms. The fact, however, remains that it’d be done solely to give me back a little normalcy. It’d simply be another price I’ll have to pay.
Dice-rolling is one of the quirky things we all have to do at some point or another. Sometimes you’ll reap rewards; others, you’ll be stuck on another person’s Boardwalk, giving away possessions merely to keep ya afloat. As the French would say, c’est la vie or otherwise, that’s life. No one ever said that life is fair. It knows no mercy or compassion. It doesn’t play favorites, either. There is no discrimination with it. Unlike us homo sapiens, life cares none for your wealth, sexuality, gender, or nationality. It hasn’t a care if you’re homosexual or worship God, Lucifer, or a totem pole. Life offers the same end-result to us all: the promise of death. You live. You die. C’est la vie. What can ya do about it?
Answer: Live it. Sure, with NF2, you’ll have hardships and obstacles to overcome. But don’t we all? Worrying about fate only makes us stop living our life. It takes focus off the here-and-now. With a disease, we tend to forget what life is and our heads fill themselves with grotesque thoughts and all this macabre of what we believe is to come. This existence is shared by us all; life, on the other hand, is more of a fingerprint. No two lives are the same. You may lose your hearing, as that is a characteristic many people with NF2 share. You may wind up getting it worse than I had. Or maybe better. Each and every life is on a per-case basis. How we end up is anyone’s guess. Yeah, I’ve had it bad and it’ll likely get worse down the road. I assure you, thought, that your life won’t become a replication of mine. I lost a finger. That doesn’t mean every NF2 patient will. Letting the uncertainties of the future consume you will serve no purpose and only distracts you from what’s important. Don’t think of what the future holds. If you’re reading this, then that means you’re still here, on this little thing called earth. You have life. Simply put, just live it and move on.
Disability is never fun. It’s taken away many of my dreams. Fortunately, I still have others and I’m not letting things get to me. Okay, so I’m not gonna be that Ozzy singing and making albums. I can live with that. In fact, I am. I have two novels to ready up for the world to read with a third on the way. My mind is oftentimes occupied with projects I wanna do. I don’t dwell on having this disease. It’s not the focus of my world. I’m getting places in the world, slowly yet surely. Plus I have a beautiful niece. Yeah, I’m an uncle, myself. There are bad and good things in my little world. The latter is the focal point of who I am. NF2 is in the front of the car; the bad things associated with it are as far in the back as I can get them. My disease doesn’t define me. NF2 shouldn’t to anyone.
The world can be a scary place. It’s scarier when things come about that ya don’t understand. My eyes opened. I saw everything clearly, more so than I had prior to 1999. There is a new outlook I have to what my life--and life, in general--is. I’m trying to make the best of it. Neurofibromatosis is a hiccup, one that might follow me forever. All in all, I was given this re-roll. And you better believe I’m gonna make the most with what I can. I want to do many things with myself. Who knows? I might win a Pulitzer someday if I try hard enough. I’m a coarse, vulgar guy but I am who I am. I’ll try my hand at things. Yes, I’ll succeed at certain endeavors and the same, I know that I’ll fail at some. The mind of the now-christened Randy Pendleton is focused on living, not dying. What shall become of me, I can’t speculate. But I still have my dreams and believe me, I’m gonna keep those dreams alive.
